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December 1, 2005
By Valerie Orleans
C. Jessie Jones, professor of health science,
was the picture of health. She exercised regularly, played
tennis and ran marathons. Her diet was healthy, and her area of
expertise was helping the elderly stay mobile and active. But about
10 years ago, she began experiencing chronic pain and fatigue.
“Over the next three years, I went to numerous
doctors to undergo many tests. I was tested for several types of
medical problems, including lupus, rheumatoid arthritis, multiple
sclerosis, depression, hormone imbalances, thyroid problems, Epstein
Barr and cancer,” she recalls. “One physician told me
that I had thyroid cancer. After the surgery he said, ‘Well,
the good news is you don’t have cancer.
The bad news is that we removed your thyroid.’”
Finally C.
Jessie Jones received the correct diagnosis: fibromyalgia. Since
then, she has turned her attention to helping others suffering with
this medical condition. Jones is currently heading up the development
of a Fibromyalgia Pain Management Program to be housed in the Center
for Successful Aging. Most recently, she has been conducting
research with a team of medical researchers across the country,
including one of the top experts in the field, Robert Bennett, professor
of medicine at Oregon Health and Science University, to learn more
about this disease and what triggers it.
Not long ago Jones took some time to answer questions
about fibromyalgia and her efforts to learn more about and increase
awareness of this chronic pain disorder.
| Q: |
What is fibromyalgia? |
| A: |
Fibromyalgia is an illness that causes chronic pain —
usually widespread musculoskeletal aches — as well as
pain, stiffness and tissue tenderness. It can also cause pervasive
fatigue and sleep disturbances. The most common sites of pain
are the neck, back, shoulders, pelvis and hands, but pain can
occur in other areas as well. Although the symptoms are always
there — some days it’s not as bad as others. |
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| Q: |
How widespread is it? |
| A: |
It’s hard to say because it’s frequently misdiagnosed
as arthritis, lupus or other diseases. In fact, it often takes
up to five years for a patient with fibromyalgia to get an accurate
diagnosis. However, having said that, physicians are becoming
more familiar with the disease. Current estimates indicate that
anywhere from 3 to 6 percent of the U.S. population has fibromyalgia,
with 80 percent of the sufferers being women. |
|
| Q: |
Tell me about your research. |
| A: |
We are conducting the first national, multi-site epidemiological
study on fibromyalgia, a great opportunity for patients to paint
an accurate picture of themselves and their experiences for
the medical community and pharmaceutical companies, as well
as the general public. We received grants from Cal State Fullerton
and the National Fibromyalgia Association (NFA) to develop a
survey questionnaire that is currently posted on the NFA
Web site. Our goal is to have a response of 5,000 people
with fibromyalgia. Within the first day of its release, 1,000
people had already responded to the survey. |
|
| Q: |
What are you trying to discover with
your survey? |
| A: |
There are several areas we are focusing on. First, we want
to determine the prevalence of fibromyalgia among different
age and ethnic groups, both genders, and in different regions
of the country, as well as gather other demographic information.
Secondly, we want to have a better grasp of the underlying
factors associated with the onset of fibromyalgia. Third,
we want to develop a medical profile of the disease.
We also want to determine the impact of fibromyalgia on functional
abilities, psychosocial aspects of life, general well-being,
medical costs, employment and productivity.
Finally, we want to learn more about the effectiveness of
pharmaceuticals, over-the-counter remedies, and psycho/ physiological
interventions. |
|
| Q: |
You are looking for those currently
diagnosed with fibromyalgia? |
| A: |
Yes. |
|
| Q: |
Haven’t there been these kinds
of studies before? |
| A: |
There haven’t been any large-scale studies for at least
a decade. That makes this study especially important, because
our knowledge of fibromyalgia has advanced so far in the last
10 years. Many more people are being accurately diagnosed with
fibromyalgia now than they were 10 years ago. The participation
of all these patients in the survey will give us a much more
comprehensive picture of who fibromyalgia patients are, and
what their experiences have been. |
|
| Q: |
What causes fibromyalgia? |
| A: |
Although the cause is unclear, the latest research indicates
that several factors contribute to fibromyalgia, including genetics
and neuro-endocrine imbalances that cause sensory processing
problems in the central nervous system, resulting in pain amplification.
It appears that for many people, some sort of trauma —
whether it’s physical, emotional or psychological —
may act as a trigger for fibromyalgia. |
|
| Q: |
Is there any evidence that explains
what’s happening? |
| A: |
Well, it is believed that those with fibromyalgia experience
low levels of nerve growth. The chemical imbalances in our neurotransmitters
create imbalances that lead to some of these symptoms. But there
is still much more we need to learn. We also don’t know
what the optimal treatments are. We hope, from this survey,
to get a better idea of what works and what doesn’t. Based
on this research, we can develop clinical trials and other research
methodologies to find ways to help sufferers cope with the symptoms. |
|
| Q: |
How bad is the pain? |
| A: |
Symptoms can vary from day to day, or even from hour to hour.
There are days when getting out of bed requires an almost superhuman
effort, when I’d like nothing better than to just curl
up and try to hide from the pain. And then there are days when
I can comfortably prepare myself for the day and meet all my
responsibilities. But no matter what I do, the pain is always
there. Sometimes it’s just a thin veil covering me, and
sometimes it’s like being smothered in a heavy comforter.
But it’s always there. |
|
| Q: |
Is there any advice you would give to somebody suffering
from fibromyalgia or who suspects they may have it? |
| A: |
I recommend they visit the NFA Web site, www.fmaware.org.
They will be able to find a great deal of information that may
be of help to manage their symptoms and learn about clinical
research that hopefully one day will find a way to reverse the
symptoms, or find a way to prevent fibromyalgia. Until then,
I believe the keys to easing the symptoms include having a strong
support system; staying educated about fibromyalgia; taking
care of the mind, body and spirit; living a balanced lifestyle;
keeping faith and hope; and maintaining a positive attitude
— the brain and mind can have amazing effects on the body.
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Other Cal State Fullerton faculty and staff members
who are working on this project include: Judy Lindemann, family
nurse practitioner in the Student Health and Counseling Center;
Shari G. McMahan, chair and professor of health science; Pamella
H. Oliver, assistant professor of child and adolescent studies;
Dana N. Rutledge, associate professor of nursing; and Jie W. Weiss,
assistant professor of health science.
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